Tag Archives: Caregiving

Courage at Twilight: Members of the Tribe

My ears are attuned to every little sound: the clicks of the break release handles on Dad’s downstairs walker; Mom’s syncopated shuffle; the single beep as the stair lift arrives at the end of the track, upstairs or down; cursing from the bathroom. This morning I awoke to the muscular sound of an industrial-strength vacuum in the master bedroom.  Through the doorway I saw Dad sitting on the walker seat and pushing the carpet cleaner forward and back next to the bed.  I did not ask, but I knew without asking.  His weekday CNA Cecilia—faithful, pleasant, and kind—came shortly after and helped him shower.  From my home office I could hear their one-way conversation: she said very little.  “Do you know how old the earth is?” he asked her.  “Four and a half billion years old!”  He knows and loves the Bible and its God, but informed Cecilia that “God did not make the earth in six days.”  Rather, He probably took billions of years to make our globe.  Dad explained to her about the sun burning hydrogen in nuclear fusion, with enough hydrogen still to burn brightly for billions of years more.  He told her that the only way we know how to use nuclear fusion reactions is with a hydrogen bomb, and referenced the atom bombs dropped on Japan.  He expounded about ocean currents, and about the hydrologic cycle of evaporation and precipitation and the rivers of water vapor coursing through the skies, and about Argentina’s defiant propensity to default on its international debts, and about the formation of galaxies and stars.  “I like to know things,” he summed up.  Cecilia, an excellent listener, interposed an occasional affirming “really?” and “oh.”  He told her about our family visiting an Indian tribe in Brazil in 1974, and how the tribal elders would not let us into their compound without being members of their tribe, and about how the tribal elders allowed us to become members of their tribe by following them on a course through the grounds and buildings, ending at a ceremonial tree, and about how we bought blow guns and bows and arrows from the indigenous women of the tribe.  This is a true story.  I know because I was ten and I was there.  Dad’s stories sometimes jump from one unconnected subject to another, shifting like an old car with a worn out clutch.  Dad lamented to Cecilia, “A few months ago I was a normal person.  I could walk.  I could do things.”  That is not true.  I know because I am 58 and I have been there with him, watching the insidiously steady downward degeneration culminating in painful undignified immobility and having to use the carpet cleaner in the mornings.  He is not untruthful—he just forgets.  And he cannot retrieve his books from his bookshelves or his checkbook from his desk or a glass of ice water, and has to ask Mom and me to fetch these and other things for him.  He asked me to bring him Mom’s youthful portrait from his desk, placing it on the end table by his recliner, where he can see it all day as he reads.  I remember seeing that portrait of Mom on his desk thirty years ago when I visited his New Brunswick office in the Johnson & Johnson tower.  He has gazed at Mom’s youthful portrait for more than six decades, and he tells Mom everyday what a wonderful person she is, and that he loves her.  And he steals hugs when she walks by, and she returns the hug and runs her fingers through his sparse wispy hair.

Courage at Twilight: Count Your Blessings

(This chapter was to be posted on December 10 but I neglected to click the “publish” button!  Hopefully, better late than never.)

When one counts one’s blessings, should the recounting of one’s afflictions come before or after? Or at all?  I am certainly greatly blessed in having moved from my solitude to my parents’ home.  Living the legacy of faithful family.  Serving and contributing and giving care.  Cooking and shopping and driving and repairing and cleaning up.  The gratitude and love and support of one’s devoted parents.  Reading dozens of books during my commute.  But the coin’s obverse also reveals itself, sometimes painfully.  My state-mandated divorce class emphasized how harmful is a parent’s geographic distance from a child.  I have paid a price by living an hour away from my teenage daughter.  We used to share an evening a week, and some weekends, cooking, baking, listening to music, playing games, sitting in the hot tub, doing crafts, conversing, dreaming.  Now I am lucky to take her to lunch twice a month.  She is 16.  She just earned her driver license.  She takes voice lessons and sings at church and in an audition choir.  She feels so far away.  In a similar vein, pursuing a romantic relationship has proven impractical what with the worries and fatigues of caregiving and homemaking.  Though I have dated, the added stress of relationship building (and, more to the point, relationship failure) has heaped new heaviness to my burdens.  My sisters tell me they love me and pray for me, that God is with me, but caution me to be aware of my limits and my needs, and to express them, so I can enjoy health and happiness, too.  That is good counsel.  One date said to me, There are lots of ways of caring for your parents without living with them.  That seemed to cheapen the revelation that brought me here.  That felt like questioning my intentions and deliberations and decisions.  That belied and belittled the magnitude of my mission and the refining value of my consecration.  Moving here was the right thing to do—even a providential revelational opportunity—but did come at a personal cost.  Was that cost worth paying?    My daughter Laura encouraged me to wrap myself in Psalm 23 as I experience this caregiving phase of life: The LORD is my shepherd. I shall not want. He restoreth my soul. He leadeth me in paths of righteousness for his name’s sake.  There is no turning back.  I am here to stay, come what may.

(Image by Hans from Pixabay

Courage at Twilight: Prayer before Murder

Mom has taken to riding the stair lift up and down the stairs, though Dad’s disability was the urgent impetus for installing the lift. She does suffer with arthritic knees, and the 21 stairs have become increasingly difficult to take on.  And even if her need is not yet equally acute, the lift is easy and pain-free and even fun, as much of an adventure as she cares for at 83.  Dad’s wheelchair routine, on the other hand, is anything but easy.  A quick trip to the dentist for a checkup and cleaning involves dozens of indispensable sequential steps, such as, transfer him from his recliner to his wheelchair; swing the foot support “arms” into forward position, and lower the foot rests; raise his legs by pulling on the tongues of his shoes; roll him in his chair out the front door, which Mom opens ahead of us and closes and locks behind us; roll down the ramps—with new confidence on the new grip-paint surface—open the front passenger door of the Mighty V8, lower his legs by the same shoe tongues, raise the foot rests, and swing out and remove the foot support arms; position and lock the chair as close to the front seat as possible, and lift by the armpits as he pulls himself mostly upright; lift his left foot into the car from behind his left knee, and push his hips with my available knee as he heaves against the handles to slide into the seat; fold and lift the heavy chair and stow in the back of the suburban.  Then reverse the whole process at the dentist office.  Then do it all again on the return trip, except that I must gain momentum to make it up the ramp, which frightens Dad in his powerlessness as I push.  Then do it all again for the eye doctor, the heart doctor, the skin doctor, the foot doctor, the diabetes doctor, the divers tests….  After depositing him again in his recliner at home, I retreated to the kitchen, and soon heard him call, “Rog, are you there?”  He wanted to tell me something from the day’s New York Times.  If I am in the same room while he is reading the newspaper, he delivers to me a verbal new reel, like today: S. Army admits botched drone strike that killed civilians in Kabul…Nineteen protesters sentenced to death in Tehran…Six-year-old brings gun to school, shoots and kills teacher…Draft pick scores 71 points in first game with new team.  “I’m here,” I reported, but thought with condemning self-examination: Are you really there, Roger?  I cook their meals, make home repairs, shop for the groceries, landscape the yards, place the decorations, run the errands, fix the computers, solve the problems, and am otherwise at their beck and call when I’m at home.  But am I really there, serving and giving, cheerful and sincere?  Or do I chafe at the chores and move through the motions and withhold real devoted love?  In many ways, my life is not my own.  I live in their house.  I eat what they eat.  I watch what they watch.  I rarely read.  I feel always tired.  Dad told me that he feels so very tired by the end of the day, and feels so very tired waking in the morning, and feels so very tired throughout the day, his reading often leading to napping.  “One of these days I might go to sleep in my recliner with my book and just not wake up.  That’s how it should be: that’s how death should come.”  He shows excitement at seeing a movie I have selected for him, then falls asleep ten minutes in.  Upon referral, we set out to watch a new murder mystery movie, our dinners growing cold on our folding TV trays.  “We should pray,” Dad reminded us, and I found myself laughing.  “Yes,” I chimed in, “we had better pray over our food before we watch our murder.”  The prayer took two minutes and the movie two hours, two wasted hours, two hours distracted from things that really matter.  I am glad we prayed.

(Pictured above: roasted vegetable bisque made from scratch without a recipe but with tips from my daughter Laura, a wonderful cook.)

Courage at Twilight: On the Edge of the Bed

The morning sky dawned pewter gray, and leaden light seeped through the plantation shutters.  I climbed the stairs after my stationary bike ride and knee push-ups, and through a doorway saw Dad sitting on the edge of the bed, in profound shadows.  He did not move, but stared at the wall, at the shutters, and I could feel him contemplating his next move, as in, Do I have the strength to slide off the bed onto the commode?  Will this day deliver the same slow struggle?  He knew it would.  The nurse had called him the day before and had reported, “The doctor asked me to let you know your MRI looks good.”  What does that mean? he had asked.  She did not know.  But I knew.  A “good” MRI means no lumbar spinal condition is contributing to Dad’s profound leg weakness and wasting, to his paralysis.  A “good” MRI means the certainty of a bad diagnosis, of diabetic amyotrophy, incurable, untreatable, a close cousin to Lou Gehrig’s disease, amyotrophic lateral sclerosis.  The call annoyed him.  He had questions for the doctor to which he wanted answers, like, Is there anything I can do to slow my deterioration? and Is there any connection between September’s meningitis/encephalitis and today’s diabetic neuropathy?  “Your MRI looks good” answered nothing, but just eliminated a negative.  Mom called to make an appointment, and the receptionist said Dr. Hunter would see him again in four months.  (If he’s still alive, I could not help muttering to myself.)  Watching Dad sit on the edge of his bed, I pushed away thoughts of his perpetual fight against despair; I do not have the strength to absorb his angst.  But I can cook his dinner, and served a beautiful baked chicken and dirty rice baked in a French cast iron casserole.  “Thank you for this lovely dinner, Rog,” Dad praised, and Mom giggled cutely for the hundredth time at being waited upon.  We browsed through Netflix for 30 minutes, and finally settled on an obscure Norwegian movie with dubbed English dialog, and Dad promptly settled into a nap for the duration.  I used the time to assemble his new office chair, since the hydraulic piston had broken on his old chair and it had sunk permanently to its lowest height, too close to the floor for him to get up by himself.  He will feel lordly in the new (and inexpensive) black bonded leather chair, and much more comfortable as he writes letters to beloved family members, one who was injured by a drunk driver, one serving a Church mission in Massachusetts, one shivering in Montana, one in the Army in Honduras, one who is brilliant and has big questions and a good heart, and to others who he loves.  These are his last contributions, the contributions he has the strength for, little actions with big meaning for those he loves.

 

(Pictured above: chicken and sausage on a bed of dirty rice, Cajun style.)

Pretty on the plate.

The old.The new.

Courage at Twilight: Slick As Ice

I did not lie. I was truthful.  But my truth was incompletely portrayed.  I had peeled back only one or two layers of the cathartic onion.  Perhaps a reader would not want or need more truth about my Christmas struggle.  “TMI” one of my children might say to another of my children who might catalog the day’s (bowel) movements: Too Much Information.  But I did not write this exploration for a reader: I wrote this exploration for myself, to study and understand what happens in the heart, to maintain my mental health amidst pressures not before encountered, and to remember the tangy sweet-and-sour of these last days.  I have grieved living alone.  I have grieved losing my spouse.  I am beginning to process the griefs of living with, and caring for, my dear dying parents.  My true Christmas griefs—frustratingly fresh, still, after seven years—are none of these.  My true Christmas griefs are the loss of hopes and dreams for a life with an intimate loving partner, the loss of a family unit in a church culture in which the nuclear family is the dreamed-for idyll, the loss of family-together traditions, family reunions, family camping trips, family vacations, family portraits.  I insist that we are still a family—families come in all shapes and sizes and varieties—and under the doctrine of my Church, we are an eternal family unit, connected forever and ever, if we want to be.  That this family has lost something, however—something living and vital and happy—is my sorrow and sadness and grief.  TMI, perhaps, especially for my children, who bear their own crosses of grief and loss and sorrow which they did not deserve and were not their fault.  Crosses I cannot carry for them.  But I can love them, I can lift them, I can believe in them, and I can trust them as they pilgrim through life.  And now I am part of another family, another variety of family, made up of a very old man and woman married to each other for 60 years, and their 58-year-old baby (Mom often calls me “baby,” as in “good-night baby” and she and Dad frequently tell me the old stories of when I was an actual baby in cloth diapers and plastic pants and gumming the crib railing and crawling to the cabinet to empty it of clanging pots and pans and lids)—a threesome family.  And the father of this family went to the hospital today for an MRI of his lumbar back, to look for and rule out an injury that would be causing his dramatic and worsening wasting and weakness, for Dad has no strength to walk, stand, pivot, lift or drop the foot plate on his wheelchair, lift his feet onto the foot plate or slide his feet off the foot plate, or heave himself into the Mighty V8.  What he has called “paralysis” for months, and what the doctors said was not paralysis but profound weakness, has become factually a very real paralysis.  As I walked through the garage door from work, Dad called urgently to me from the bathroom—I ran to help lift his fleece pants over his hips and pivot to lean heavily into the walker.  The bathroom routine has many procedural steps, all important, but the procedural nightmare is, ironically, a doctor visit—the doctors may kill him before his illness does, what with all the consultations and tests.  Sparing the minute sequential detail, I will mention only one step, that of rolling Dad in his wheelchair down the eight-foot ramp.  In the fall I stained and finished the ramp, and it is handsome and shiny and brown…and slick as ice when wet from rain and snow.  The snow came last night, a warm heavy snow, leaving every surface thoroughly wet, and I simply could not wheel him down the ramp today, not without falling on my backside or my face and losing Dad and the chair to gravity and the sloping driveway.  So, in a huge irony, and with great difficulty, I helped Dad up out of his wheelchair, down two steps, and back into his wheelchair, bypassing my beautiful ramp.  If the temperate 50-something weather holds (it will not—this is December 28), I will slather on a grip-paint product recommended by a neighbor, who I think is worried I will kill my dad or myself on my ramp.

Courage at Twilight: Dream Walking

Behold: The Carina Nebula's 'Mystic Mountain' | NASA

I sat on the side of Dad’s bed to wake him on this Sunday morning, this Christmas morning, to talk about getting him showered and dressed and settled in his reading recliner. I could see that his whole body ached as he turned his head on his arthritic neck and stretched out his invalid legs and brought his arms under him to reposition.  His welcoming words were unexpected: “I have dreams…”  I wondered what kind of dreams, whether literal sleeping dreams or waking hopes and aspirations, and did not have to wait long to learn.  “And in my dreams, I am walking.”  I was touched that he had allowed me into this intimate and personal place, the place of his soul’s desires, and was touched by the aching irony of his wish to be healthy and for his body to function, but to be able to do so only in impotent dreams.  Dreams for the present broken.  “Sometimes,” he continued, “sometimes I think my paralysis has happened to me because God is trying to teach me a specific lesson.”  I personally am disinclined to believe God targets us with specific afflictions to teach us particular truths.  Rather, I am inclined to believe that the nature of this life is designed to bring us into inescapable contact with experience, and the equally inescapable choices associated with that experience.  A coworker is rude to me, for example.  That is the experience.  Will I react angrily, self-righteously, and judgmentally, or patiently, compassionately, and empathetically?  That is the choice.  And my choice—that all-powerful vehicle of self-creation—establishes the trajectory of my character.  But despite my inclinations, who am I to say that God cannot teach us in surgical fashion when he finds it appropriate?  “I want to be the kind of man who chooses to be humble of his own volition and is not compelled to be humble” by God or by circumstance.  Dad’s humility is the least of my concerns for his soul.  In fact, I am not concerned at all for his soul, only for his present comfort and happiness.  When Dad kneels before his Savior, he will look up into that glorious face and declare, “I did my best, Lord!”  That will be a sweet moment, for God accepts the offering of every effort we make for good.  With crumpled wrapping paper strewn about on the floor, and small piles of Christmas gifts on chairs, Dad sank into his gift of a Popular Science edition about outer space.  A photo of the Carina Nebula decorated the back cover, a gift from the Hubble and the James Webb.  “I love outer space,” he exclaimed.  “It won’t be long before I’m there.”

 

(Photo of the Carina Nebula courtesy of NASA, used here pursuant to the Fair Use Doctrine.)

Courage at Twilight: Moving Pieces

Mom and I started a puzzle. 500 pieces.  It came in the gift basket delivered by the caroling young women from church.  It is a pretty puzzle of a nature scene, in the mountains, tinged with the scarlets of early fall.  Warm and pleasant, a reassurance during our freezing dirty-snow urban winter.  Mom separated out the edge pieces and starting making matches.  I managed to frame the border during a Father Dowling mystery episode (which I handle so much better than NCIS for the 1990s absence of violence and gore).  During a dinner of creamy chicken vegetable soup, Dad obsessed about the bitter cold and how during their first winter here 24 years ago a pipe burst in the basement for lack of insulation (the contractor’s helper had run out of insulation and had left the pipe exposed and the contractor now had to come back and fix the pipe and fix the ceiling and fix the wall, plus add the insulation that would have prevented the whole disaster) and how this year he did not have the strength to wrap the house hose bibs like he has done every year before and how they were exposed and how he hoped they would not freeze and crack and he wondered how far into the house zero degrees could penetrate and could zero degrees reach the basement pipes and burst them again?  Seeing no point in discussing the matter, I dressed in a heavy coat, strapped on a headlamp, and left the house armed with a stack of thick rags, plastic shopping bags, and neon-green duct tape, trapsing through deep snow to wrap the faucets—we all hoped this precaution would be sufficient, noting that the faucets were already anti-freeze hose bibs.  “You have set my troubled mind at ease,” Dad smiled thankfully.  Needing to rise at six the next morning, I said good-night at ten and bent to bed.  But I often wake at 12:30 in the morning to the sounds of Dad’s effort to transfer from the stair lift to the wheelchair, and Mom’s efforts, in her long cotton nightgown, to push the chair to the bed, Dad helping what little he can, and their talking, and sometimes their bickering over him issuing instructions she was already following.  I can tell from the tone if my help is needed, when I throw on my bathrobe and respond.  So long as he maintains his night-owl lifestyle (granted, he no longer reads until three in the morning), I cannot be the one to help him get to bed.  A routine of caregiving until 1:00 a.m. then rising at 6:00 a.m. daily would destroy me, probably in only two days’ time.  Thankfully, the CNA assists Dad in the mornings after I have left for work.  She knows to use the wheelchair to get Dad from the bed to the shower, to use the heavy-duty seated-walker to get him dried off and to the couch for dressing and to the stair lift to descend for breakfast and a day’s reading.  That is what he can do: read and read and read.  And too quickly the time comes to prepare another dinner worthy of them and the legacy they leave, perhaps lemon chicken on a bed of pesto couscous, or Hawaiian chicken on a couch of coconut rice (my favorite), or stewed spicy chicken and dirty rice, or, on occasion, beef franks sliced into canned pork and beans.  The puzzle beckons after dinner is cleaned up.  I stare at 500 unconnected pieces, feeling totally intimidated, knowing I can never find two matching pieces in that chaotic morass of 500, then somehow forming the border and slowly fitting together the interior, until the puzzle is done, and I am astonished and wondering how it happened.  So many pieces.  So many moving pieces.

Courage at Twilight: Transference

We have experienced another week of steady decline in Dad’s mobility.  He has suffered increased weakness.  I have suffered increased worry.  He cannot walk.  Life is very different when you have walked for 86 years and suddenly find yourself paralyzed and immobile.  The word of the day is “transfer,” by which I mean the experience and process and effort of shifting one’s bulk from one seat surface to another, like from and wheelchair to a toilet, or from a shower chair to a walker chair, in which one moves laterally rather than vertically, and does not ambulate.  I sat down across from Dad to suggest the time had come to focus on transferring rather than walking.  “I think we should refocus our approach,” I explained.  He nodded in sad reconciliation, feeling humiliated and small.  How could I reassure him?  In truth, with the power wheelchair, he can enjoy greater independence and freedom of movement than with trying to walk.  But transference is a skill to be practiced—it is not an easy exercise, and I invite you to pretend your legs do not work and try transferring from one chair to another with only the strength of your arms and the span of your bottom.  Now add arms to those chairs.  To help him transfer from off his sofa to his wheelchair, I installed risers under the sofa feet, raising the couch five inches, and screwed three inches of lumber to the legs of his recliners.  Struggling with this new necessary skill, his transfers can be, shall we say, inaccurate, like onto the arm of a chair instead of into the seat of that chair.  Some transfers are violent, like when he fell from his wheelchair onto his couch so roughly that he knocked the couch of its risers and was lucky not to capsize altogether.  Since the escapade did not end tragically, I can comment after-the-fact on how I wish I had seen it happen and how funny it must have seemed.  A hair’s breadth of fate or providence separates tragedy from comedy.  Dad pronounces all his mishaps as comical, veritable jokes, although he curses more than he laughs when in the midst of transference.  Mom pounced on me when I came home from work, before removing my coat and tie, asking me to re-elevate the couch.  Then she showed me the toilet plunger sitting in the kitchen sink, and explained how the food disposal had plugged up with old spaghetti, and she could not clear the clog, try as she might.  Putting my height and weight into the plunger, I compelled the dirty water and ground up food through the pipes and successfully drained the sink and emptied the disposal.  She is always so grateful when I fix things she can no longer manage.  The next problem to solve involved her pharmacy of 24 years.  She and Dad had received letters informing them that their pharmacy was no longer in their insurance network, and in only two weeks they would have to pay full retail price for their medicines.  I offered to help switch to a new pharmacy, and envisioned the hassle and weariness of assembling all the prescription bottles and insurance cards and driving to the new pharmacy to see the staff and taking an hour to input the data into the new system, and the weather was very cold, and the streets icy, and the sky darkening at 4:30 p.m., and I really did not want to leave the house on this cumbersome errand.  Instead, I called the store, they took our information, and promised to get their information transferred from the old pharmacy to the new.  Mom beamed, amazed at my miracle working with the sink and the pharmacy.  I will try to elicit the same response with tonight’s dinner.  It is time to shift from writing to cooking.

(Pictured above: Italian pesto pasta and chicken with brazed asparagus.)

Courage at Twilight: A Grimless Reaper

December 17.   Twelve degrees Fahrenheit.  I am hiking to Bell Canyon Falls.  But I am not alone this time.  My son John read about my December 4th loneliness and invited me to hike with him today.  Dad slept still when we left, but Mom asked his questions for him, about whether we had water, food, good boots, warm gloves, our hiking poles.  We pushed past where I had turned around two weeks before, pushed up to where the slow lay three feet deep beside the trampled trail.  We talked about life and love, relationships and challenges, joys and dreams, and I rejoiced quietly in his conversation and his character.  Cold in my bed two nights before, I had dreamt of death, a peaceful dream in which the presence of Death descended gently to touch those whose time had come to return—a soft, benign touch, not threatening, but caring and compassionate, possessing a perspective large as a universe about our journey through an eternity of time in an infinity of space.  Still, when I awoke in the dark, I felt compelled to check on Mom and Dad, to see if the dream had been prophetic or merely a macabre play on my anxieties.  As I stood in their bedroom doorway, the nightlight on the wall behind me cast an enormous human shadow on the wall before me, and I thought of the grim reaper, only I was grimless, and guileless, and I was not a messenger or a harbinger, but a steward and a servant and a son.  Dad snored calmly, and Mom’s sleep had sunk beneath his snores.  Throughout the week, groups of neighbors and church members had stopped by to wish Mom and Dad a merry Christmas.  A group of six young women and their adult advisors came to carol.  Dad had wanted to greet them in the formal living room, but he could not walk that far—he may never walk that far again.  So he smiled and joined in the singing from where he was, holding the large gift basket in which lay a loaf of cranberry walnut bread, wool-blend socks (even a pair for me), and mint truffle hot cocoa mix.  A bunch of boys with their adult advisors came to deliver a puzzle and oranges and blonde brownies and Andes mints.  Couples delivered a pineapple, whole wheat bread, peach freezer jam, a poinsettia, ornaments for the tree, and green bananas (because Mom told them Dad likes green bananas, not the brown blotchy sweet ones she enjoys), each gift an expression of love and regard and caring.  This is what I thought about as I slipped and rolled clumsily but harmlessly down the steep snowy mountainside, snow sticking to every inch of me, still with no spikes on my boots, still in the mountain’s cold shadow, my knees complaining loudly, the moisture from John’s breath frozen stiff on the whiskers of his mustache, my water bottle frozen in my coat pocket.  And then sunlight struck the tops of the snow-laden trees and worked its way warmly down to the snow-covered sagebrush and the deep snow drifts and the path and two hiking men with their poles swinging in easy rhythm.

Young ladies caroling to Mom and Dad.

John posing before the frozen Bell Canyon Falls.

Courage at Twilight: Will You Stand By Me?

I am the shy quiet guy that lives with his parents, almost 60 years old, who they see pushing Dad’s wheelchair very slowly, so Mom can keep up, down the aisle to the front church pew, where a space is reserved for a wheelchair, where Dad has a better chance of hearing the worship meeting speakers, in the front where our family has sat in church for decades: in the front, where Dad, sitting on the stand those many years, presiding and exhorting and teaching, could keep an eye on his six children, not that we caused any trouble, and where he could be as close as possible to his family while carrying out his lay clergy duties. I am slowly learning their names, making a few acquaintanceships crawling toward friendship.  But today Dad was too weak to attend church meetings, and I had my granddaughter Lila with me, and we walked hand in hand down the aisle where Mom sat alone on the front church pew, and I could feel the eyes on me, friendly and interested and astonished eyes, and could hear their thoughts: Oh, he has a story!  And they wondered what my story could be as they saw my oldest son and his good wife and the little black-haired baby, my newest grandchild, and Lila my three-year-old friend, all sitting together in the front.  I share my desserts with church families now and then, always friendly cheerful encounters after which, as I am walking away, I hear them thinking to themselves: I wonder what his story is?  And they wonder if mine is a strange tragic story, as they munch tentatively, at first, and then with gusto, on my latest baking attempts, tonight’s being an enriched German holiday “Stollen” bread filled with dried fruits and sweet almond paste.  I baked the Stollen after cleaning up our Sunday dinner dishes, when I wanted to get off my aching feet but wanted more to make something pretty and interesting and sweet.  Dad asked if he could have a slice, which of course I gave him, in spite of the spiteful diabetes that is wrecking him, because he will be 87 in two weeks, and it was a thin slice after all, and let him live a little for heaven’s sake, and I said “no” to his importuning for seconds.  And he asked me, “Rog, will you stand by me while I try to stand up?” but I heard, Rog, will you stand by me as I am wasting away, in my pains, as I am dying?  Will you stand by me to the end?  Yes, Dad, I am here, and am not going anywhere.

(Pictured above and below: my first attempt at Stollen, an 18-inch loaf–delicious.)

Courage at Twilight: Diabetic Amyotrophy

Dad’s eyes followed me as I moved about the kitchen preparing my breakfast. “Let me know what you think of those gluten-free no-sugar keto cereals,” he commented as I rummaged through cereals bought for him that he will not eat.  You could try them yourself.  “Not blackberry jam!” he gibed when I took the bottle out of the refrigerator.  “Are you putting blackberry jam in your peanut butter granola?”  No, Dad, I’m having toast with jam.  “And is that cream cheese?”  Yes, Dad, I like it with toast and jam—reminds me of Portugal.  “You’re putting milk on your cereal, right?”  Oh, my, gosh, Dad—stop commenting on my food!  I can feel his eyes on my every movement, and I want to scream.  But they are benign, innocent, aged eyes.  Why does the inoffensive become so irksome in people we love so much?  After breakfast would come the drive to the hospital for the NCV and EMG tests.  “You brushed the snow from the Suburban, right.”  Of course, Dad.  And I shoveled the driveway.  And the Terry’s driveway—he has been looking feeble lately—and Melissa’s driveway.  I had enjoyed marching the snow blower through four inches of new powder; it sparkled in the sun at it flew.  Clearing our own driveway was anticlimactic, so I moved to the neighbors.  I hoped they would now know it was me—I enjoyed thinking of their surprise and gratitude.  And, being anonymous, I would not have to face my clumsiness at being thanked and smiling and saying you’re welcome and other social engagement awkwardness.  I have noticed my happiness is greatest when contributing to the happiness of others.  There is joy in service.  So why do I spend so much solitary energy unsuccessfully pursuing my own happiness?  There really is something to that business of finding your life by losing it.  At the hospital, the doctor performed two tests.  First, nerve conduction velocity: he hooked up small electrodes above key nerves and administered numerous not-unpainful electric shocks to measure nerve conduction in Dad’s legs and arms.  Second, electromyography: he inserted a needle in key places to “listen to the muscles” as Dad flexed them in various instructed ways.  Dr. Hunter focused on his work as I focused on Dad’s grimacing face and jumping limbs and spots of blood dripping.  The testing shows you have severe neuropathy in both legs; severe nerve damage.  We now, finally, have a diagnosis.  Diabetic amyotrophy: rare condition…severe burning leg pain …weakness and wasting of the muscles.  Experienced by older patients with moderate controlled diabetes.  No cure; no treatment.  The pain may subside, but the weakness will remain: your strength and mobility will not return.  I am sorry.  “Well…that’s life…I’m 87 in two weeks…my body is falling apart…that’s what happens.”  I retrieved the wheelchair from the back of the faithful Suburban, helped Dad slide from the front seat into the chair, pushed him through the melting ice and up the slick salt-covered ramps and through the front door to his recliner, the salt crunching under the wheels against the cold white tile.

(Pictured above; our after-hospital dinner of lemon chicken on a bed of pesto couscous with white bean and corn salsa.)

Courage at Twilight: Bittersweet Good-byes

 

“I’m not doing my arm exercises today,” Dad announced with some belligerence. I had heard the CNA coughing and sniffling continuously as she helped him bathe and dress.  How ironic, and alarming, for a health care provider to bring sickness into our home.  Dad was none too pleased, and invited her to leave an hour early.  He asked me for the physical therapy supervisor’s name (we’ll say “PT”) and phone number: “I’m going to call PT and tell him not to come back.”  Dad could not walk, could barely move, the day after PT poked and pushed and stretched him, yet a new depth of debilitation.  He made the call and left a message.  He did not confront either the CNA or PT, instead just removing himself from the threats.  For days now, there has been no question of walking to the bathroom at night: the bedside commode has to do, and it is all he can manage to transfer from the mattress to the commode three fee distant.  Today he could lift neither foot over the four-inch lip of the step-in shower stall.  On a happier note, I installed the old steel banister, removed with the stair lift installation, in the basement stairwell, making trips to the cold storage room and the freezer much easier for Mom: a “piece of cake.”  This morning I brought up frozen chicken breasts to thaw.  Hyrum came over for dinner—his last, for a while, with Mom and Dad—and I transformed the raw bird into tangy Hawaiian chicken on a coconut rice bed.  Hyrum, at age 20, is leaving for Brazil to begin his volunteer missionary service, as I did in Portugal in 1983, and as Dad did in Brazil in 1956, for The Church of Jesus Christ of Latter-day Saints.  Two years he will be gone, and I will miss him.  He is my son and my friend.  Dad told him the old stories about eating avocados the size of grapefruits for lunch and being arrested at the behest of local clergy and inviting hard men to lead their families in kneeling prayer and about feeling the love of God for the people.  Hyrum said his farewells, promising to send Mom and Dad his weekly email updates.  “I may not be alive when you get back, Hyrum,” Dad mused, “but I’ll be happy to read your emails while I’m still alive.”  Hyrum and I were both poignantly aware of the real possibility of Dad’s passing before Hyrum’s homecoming, making sweeter and sadder this good-bye from a grandfather to a grandson.

(Pictured above: Hyrum with Dad and Mom.)

The basement stairs, before and after installing the steel banister, left.

Courage at Twilight: Phases I Never Knew

Every day, it seems, Dad laments, “This is my worst day yet, Rog.” Every waking walking breath is an audible grunt or groan—no normal breathing in this house.  He fights for life with all his energy and might, both of which are diminishing—he knows it, and he is disheartened.  And so am I.  In my 14 months living here, I have seen Dad progress through late-life stages I did not know existed, from the two-foot-shuffle to the hand surf, from the hand surf to the clickety cane, from the clickety cane to the walker, from the walker to the so-slow stair lift, from the stair lift to the wheelchair, pushed, then self-propelled.  The recliner is an ever-greater presence in each successive phase.  So is the pain.  My worst day yet.  What am I supposed to do with that statement, that fact?  How am I to hold and examine and process that reality?  Why, of course, I am to be a fathomless fount of patience and love, of smiles and good humor.  And, of course, I am not.  I am a shallow pond of brine, with fresh water trickling in here and there.  His reality creates mine, and I find myself more irritable and impatient, symptoms, perhaps, of feeling powerless, and empty, and tired, and stuck.  I began this experience as a consecration, a mission of providential origin, I thought, and still think.  But a mission’s initial glamor always attenuates and turns into a long hard slog.  One’s initial intentions, however sincere, begin to quiver and equivocate.  Only then can I see, do I know, the kind of missionary I am.  No saint, to be sure.  No hero, certainly.  Just a laborer who shows up day after day, whose contentment is not to be found in his perquisites but in the solitary knowledge he is doing what must be done.  That alone is ennobling, I suppose.  And will this mission, this story, have a happy ending?  As with all true stories, the answer is both yes and no—both the joy and the sorrow.  How I feel when the story ends will be my choice.  Before it ends, however, I can choose to listen with a smile, to cook and clean with good cheer, to do the honey-dos with zest instead of a sigh and a roll of the eye.  Time to stop writing.  Time to get to work.

(Pictured above: the javelina guards the varnished ramp, slippery from last night’s snow.)

Courage at Twilight: Dirty Rice

I informed Mom and Dad I was cooking southwest wraps for dinner: ground turkey, black beans, corn, and rice rolled in tortillas and crisped in an iron skillet.  He looked at me funny and asked, “Rats for dinner?”  “Wraps,” I reassured him.  Earlier in the day he had cut himself.  He had reached through the bathroom doorway for his walker handles, and the door’s strike plate had sliced the paper skin of his forearm.  The CNA wiped the floor clean with baby wipes, and bandaged his arm.  He sat at the kitchen table telling me about it.  My daughter Laura has sent me her ten favorite recipes—all winners—and I have made two or three each week to spice up Mom’s and Dad’s dinner time.  Tonight, we gobbled up Cajun chicken with dirty rice, which I learned is rice cooked in the fats and juices and spices from cooking the sausage and chicken pieces.  Dad praised the meal no fewer than six times before we finished eating.  I relish the experience of making beautiful and delicious dishes which people enjoy.  As we ate, Dad told me the results of his Mayo Clinic spinal fluid test.  The nurse had called to inform him that his spinal fluid is “completely normal.”  Completely normal.  “My spinal fluid is completely normal,” he sounded discouraged.  “But I am getting worse by the day.”  Once again, the good news was hard to take.  No diagnosis equals no treatment.  Here was one more possibility explored.  Here was one more hope disappointed.  Here was yet another beginning of searching for elusive answers while suffering unanswerable pain and weakness and while fighting for his life and for his quality of life.  I am powerless.  All I can do is cook dirty rice.  James the physical therapist stopped by after dinner to evaluate the effectiveness of therapy.  He asked Dad all the same questions everyone else has asked.  He poked and prodded and asked “Does that hurt?” a dozen times.  Yes, it hurts.  A lot.  After ten minutes, James had figured out what dozens of doctors and nurses and tests and therapists had not figured out.  The spinal nerves are inflamed, causing him pain, due to his age and his recliner sedentariness and his stooping over and due to his spinal joints not being moved and not circulating blood to the nerves which therefore are inflamed and causing him pain.  Simple.  Just do these exercises.  And don’t sit: sitting kills your nerves.  I am skeptical of any one person who has all the answers, and that quickly.  But, could he be onto something?  I will try to help Dad to the exercises.  Meanwhile, he is too tired and weak to anything but sit in his recliner and kill his nerves.  He invited me to turn on the Christmas lights wrapped around the bushes, and asked if they had come on despite the snow.  Yep, I answered, for I had wrapped every joint and plug with black electrical tape to keep out the water, as I did last year, and the year before.

Courage at Twilight: Getting Ready

For a second time, United Health Care served a termination notice, ending Dad’s care the next day. Sarah scrambled to assemble her second appeal, bolstered by Dad’s nurse and physical therapist who averred he “would benefit from continued skilled therapy to maximize patient’s independence at home and reduce rehospitalization risk.”  And for the second time the appeal was granted only after Dad was to have been expelled.  But we only need two more days, and then he will be coming home.  Not to his own bed, sadly, but to a hospital bed on the main floor, in the office and library we transformed into a bedroom, still finding room for a computer—Mom’s wedding portrait sits framed on the desk these 60 years later—and a shelf full of his favorite books, with paintings of Jesus on the walls.  The bed will come in two days, and I will assemble the commode tomorrow.  In the meantime, Dad has worked hard pushing the walker down the hall and climbing up and down two railed stairs, after which he is exhausted for hours.  Still, he makes incremental progress every day.  With new hope, lost for a time, he has been hinting stubbornly that he anticipates settling back into his old-friend habits of reading late into the night and climbing the stairs alone at 3:00 a.m. to fall into bed, and arising at 10:00 a.m. to shower and dress and to brave the stairs and eat breakfast at noon.  And my mind shudders from the memories of pulling him up the stairs with a belt and lifting him off the toilet and hoisting him into bed, repeatedly, and his trembling and groaning and collapsing under me, and the thought of continuing fills me with dread and frustration and my own trembling, and I want to scream that I’m not doing this anymore!!! In my mind I have been rehearsing speeches to him about how his unhealthy night-owl habits not only weaken him but frighten and exhaust Mom and me, and how the thought of picking up where we left off the day of the ambulance ride, as if that ride had never happened, and thinking absurdly that I’m all better now when he almost died and he still barely can move and each step alone on the stairs is a tooth-clenching death dare.  The extent of Dad’s recovery is remarkable; I had felt the reaper breathing foully on me from too close.  Still, the thought of Dad’s homecoming has brought me no joy, only stress and anxiety and the phantom smell of raw onions, and visions of mayonnaise smeared on the kitchen counter, and the awful wait as Dad somehow pulls himself slowly up 16 stairs at 3:00 in the morning when I should be sleeping soundly but cannot for knowing how impossibly difficult each stair is to step up, and how easily he could misstep and tumble to the landing in a crumpled pile, mooting in three seconds the so-long month of pains and efforts, setbacks and struggles, fears and tearful longings, and the small but hard-won victories during four weeks of hospitalization and convalescence—all that for nothing, all that for the pride of doing it my way.

(Pictured above, Dad’s office-turned-bedroom awaiting his hospital bed, and him.)

Courage at Twilight: So Many Cards

Cards have begun to pour in from the Church primary children, and from some of the men and women of the neighborhood, and from family members, and former missionaries, all with sincere and adorable and tender messages to Dad, including great-grandchild scribbles. We taped all the cards to Dad’s rehab room wall, where he must see them every day, to remind him that many people love him and hope for his healing and return home.

You Are the Best! 

Never Give Up! 

I want to play Legos at your house. 

Hurry up and get better.  We miss you at church!

I love you so much!

I hope you get well soon!

Please know you’re in our prayers and thoughts.

Your awesome!

I think about you every day!

I like to play outside and look for pinecones in your backyard. 

I hope you get better soon.

Hoping and praying for you every day.

Feel beder.

You are the goodest Baker in the world.

You’re cool!

We love you.

You can do this.  Never give up.

I love you Grandpa.

Courage at Twilight: Simple Gifts

Vases of aromatic garden flowers.  A gallon of two-percent milk.  Enormous sweet grapes on a plate.  Crayon-colored cards for dear Brother Baker from Church primary children who don’t know who he is but still care.  Burger King Whopper and fries: Mom’s favorite.  Rides to the hospital from women who know the way well—a beloved son with bacterial meningitis; a husband who fell from a second-story ladder; an amputation gone wrong—and visiting along the way.  Baked chicken salad wrapped in puff pastry.  Soups and a salad.  Giant chocolate chip muffins.  A man on a bicycle checks my sprinkler leak, and will get back to me.  Chocolate-caramel brownies—oh my.  Our names prayed over in temples across the world.  Smiles, and waves, and inquiries: How’s Nelson?  Well-wishes.  A quiet house.  Love, and hope for tomorrow.

Courage at Twilight: Visiting Hours

Visiting hours are 9 to 9, which seems quite generous. The other rule, however, is not.  Only two visitors at a time.    Despite the three-person couch and other chairs and the spacious room.  So, my saintly 83-year-old mother, who has gone to the hospital for eight days straight, must leave her sick husband’s side for two neighbors, or two siblings, or two children, or two grandchildren to visit.  Or Mom stays in the room and only one other visitor is permitted.  I had seen the rule on signs in the elevator, nursing station, and the patient room doors.  But since none of the staff had troubled us over three visitors, or four, for five consecutive days, and since we are quiet, peaceful, clean, and helpful people, I thought perhaps the hospital did not mind so much.  Not so.  On day six Big Meanie nurse instructed all but two family members to leave.  It’s IMC’s rule.  I did not argue or accuse or abuse, but I did inquire, in an effort to understand, and to explore flexibility.  Did it make a difference that I am Dad’s attorney in fact and have his advanced directive in my briefcase?  I’m sorry, but no.  Did it change things if I am the authorized physician contact for when the doctors stop by to explain their diagnostic and treatment efforts?  No.  What about the fact that we are all Covid-19 vaccinated and boosted?  No.  Did it make a difference if immediate family were gathered bedside to perform my Church’s religious ceremony of invoking the power of faith and pronouncing a blessing of health and healing on the sick?  No, and that isn’t the case here anyway.  Well, it was the case when Dad’s three siblings and their spouses, and my brother and sister and me, gathered around him to give him such a blessing.  A beautiful thing for loving, spiritual family to do, perhaps the last opportunity to do such a thing for Dad, to offer this expression of faith and hope and love, and perhaps of good-bye.  Did you know that we have been very helpful to the nursing and therapy staff, adjusting the bed angle and height, feeding Dad, sponging him off, helping slide him head-ward when he had slipped down the sloping mattress, brushing his teeth, shaving his chin, helping him stand, pivot, transfer, use the toilet, take a seated shower, stand, pivot, transfer back to the bed?  For all her strength and grace and experience, Heather could not have done it all without us, and thanked us for our contribution and learned expertise.  So, I left Dad’s room and walked down the hall to sit uselessly on a cracked and stained sofa, where I could not help or comfort or observe.  I felt angry at the rule, and thought it inhumane—a bureaucratic pronouncement out of context.  (I learned later that the two-visitor limitation was not IMC policy, which was, instead: Maximum number of visitors at the bedside is determined at the discretion of the care team.  Discretion was allowed, after all.)  I felt angry at Big Meanie nurse who enforced the rule so militantly.  And after two days she went off shift and the familiar smiling nursing staff welcomed us all back to be helpful and complimentary and appreciative.  To be present.  For our father.  For each other.

 

(Photo from intermountainhealthcare.org, use pursuant to the fair use doctrine.)

Courage at Twilight: Being Useful

I made the mistake of characterizing Steven’s help as heroic.  With a look of alarm, he disclaimed any hint of heroism.  Even before his reaction, I realized that “heroic” was not the right word.  “You’re a hero” is a lazy cliché, and I should have made an effort to find more accurate words.  He supplied them for me: “I was just glad to have been useful.”  I had watched him use his own feet to move Dad’s feet up the stairs and across the room to the bathroom or bed.  I had watched him help Dad shower in the hospital, passing dallops of soap to Dad’s own hands, and washing Dad’s inaccessible extremities.  Nurse Chloe had gently adhered special heel bandages because Dad’s heels pressing into the mattress, hour upon hour, day after day, had begun to blister his skin, and we worried the tissue would die from insufficient circulation.  And she had wrapped his feet and ankles in foot-shaped pillows to further reduce diabetic risk.  And my brother had used sanitary wipes to scrub Dad’s soiled shoes clean and white and like new.  He certainly had been useful, indispensable even.  And that is what sons and daughters ought to be in their parents’ old age: not heroes, but servants.  Useful.  Doing what needs to be done.  Meaning well while acting in all their weakness.  And they were.  And I naturally thought of another servant who washed out the stains and washed the feet and set the example for us all.  Steven flew home today, a home far away—and when people tell me I’m heroic, now, I demur, and reply that I am just glad to have been useful.

Photo above: a fresh bouquet today for Mom from a neighbor Church member.

Courage at Twilight: So Many Questions

Is this the end?  Will he get better?  What help do I ask for?  What help do I accept?  How do we get him to the bathroom, up the stairs, into bed?  Do we carry him down the stairs and to the car and drive him to the hospital, or do we call 911 because we cannot safely manage?  Did you bring his hearing aids?  What brought you to the emergency room today?  Is a lumbar puncture more dangerous than a spinal tap (or are they the same thing)?  What is the difference between meningitis and encephalitis?  Will he ever come home?  What do I tell the family?  And what do I not tell?  Is the occupational therapist single?  Why won’t he eat?  How do I manage multiple group texts, frequent updates wanted?  Why am I binging on onion rings and chocolate ice cream?  Why am I so tired?  Why am I so tense?  Why do I want to vomit?  Will I get through this?  How am I going to get through this?  What will I do when my brother goes home?  What are the visiting hours?  Who will take care of Mom when I’m at work?  Will you pray for him, please?  Do you want to watch TV?  A movie?  High Road to China or White Nights or Nacho Libre or The Scarlet Pimpernel?  Do you have a Galaxy S9 charging cord?  How are his blood glucose levels?  I wish I could retire.  What are their insurance co-pays, deductibles, and out-of-pocket maximums?  How can I get all my work done?  Will the mayor fire me?  Why do my colleagues keep sending me work when they know where I am?  Did the nurse sponge his back and give him his insulin shot?  Why is his knee pain so intense?  Why is the knee fluid brown?  Why won’t he take the narcotic?  Why won’t he swallow?  Can he swallow?  What do I do if he chokes on his food?  Who brought the pretty flowers, the red and white carnations wrapped in baby’s breath?  Do you have any questions, sir?  Will I know when it’s time to gather the family?  Did you bring his hearing aid batteries?  What did you have for lunch?  Where did we leave off with James Herriot?  Wasn’t that a lovely story?  How were your onion rings, Mom?  Does he have an advanced directive?  What is your name and what day is it and where are you right now and who is the president of the United States?  Do you consent to the procedure on Mr. Baker’s behalf?  How are you feeling tonight, Dad?  Can I raise your bed or rearrange your pillows or bring you another blanket?  Can I help you brush your teeth?  Can you see the mountains from your window?  How can I know the truth about anything?  What will fill the emptiness?  Are you with me, God?

(Photo from Intermountain Health Care used pursuant to the fair use doctrine.)

Courage at Twilight: The House Is Oddly Quiet

Imagine being strapped to another’s body and operating it from behind, climbing the stairs, lifting the body’s leg with yours to climb one step, then the other leg and another step, and more steps, the body sinking heavily into yours, a big body, a body too weak to move without help.  That is how my brother managed to convey Dad upstairs to bed.  We consulted, and we realized Dad needed hospital help, and we realized we could not safely convey him down the stairs and into his wheelchair and into the car, and we called for an ambulance.  Such sudden profound weakness: Dad could not move.  “I don’t understand it,” he bemoaned.  “I could do this two days ago.  Now I am so totally and absolutely weak and wasted.”  We had taken Mom and Dad to the Temple Quarry Trail in their wheelchairs.  Dad had not wanted to go—he felt too tired.  But we insisted he come, for his face to soak in some sun, for the fresh air to move around him and fill his lungs, to see the green of wild cherry and mountain maple and gambel oak—Mom brought home a pretty hatted acorn—and boxelder trees, to hear the river spilling noisily over quartz monzonite boulders.  To see Gabe gazelling down the trail with a four-year-old’s ebullient life dance.  But then the stairs, and the ambulance, and the utterly profound weakness.  “Common infections can present with profound weakness and disorientation in older patients,” the doctor explained.  Dad is now too weak to talk, too weak to chew his turkey cream cheese cranberry sandwich which sits drying on a plate, too weak to reach for his diet coke, staring through the 8th floor window at his beloved Wasatch mountains towering over the valley.  A last look before leaving his room for the evening: Dad is sleeping exhaustedly, his face glowing with diffuse light from the lamp above his bed, and he seems to lightly inhabit two worlds at once.  We are keeping up our spirits up at home, Mom and siblings and me.  We have experienced precarious near-collapses and kind ambulance EMTs and the ever-dragging emergency room and tests and scans and the making of plans one hour at a time.  We are weary.  And something feels different in the house.  Dad’s floor lamps do not burn until 3:00 a.m. with his reading.  His New Balance shoes sit empty by his chair.  Mom looks over the railing in the middle of night, like she does every night, to check on her beloved, to see him sleeping or reading and happy, but the chair is empty and dark.  The house seems oddly quiet, with someone missing.  And we pray for him to come home.

The Gambel Oak acorn Mom brought home from the Temple Quarry Trail.

Courage at Twilight: Banana Pancakes

“Could this really be the end?” Dad wondered aloud to me.  He could not even pivot on his feet to point-and-fall into his chair, and his legs trembled on the verge of collapse.  His sudden decline accompanied his cold—he tested negative twice for Covid antigens.  Yesterday was Wednesday, my long City-Council-meeting work day, and when I walked through the door at 10:30 p.m., Mom sighed with a drawn look, “I’m glad you’re home.  Your dad had quite an adventure today!”  Dad’s adventure was not watching hummingbirds on his back patio with Lone Mountain in the background, but a runaway walker crashing into the fireplace brickwork and Mom calling neighbor Brad to pick Dad up off the floor, which took several attempts.  He could not rise from his newly-elevated recliner, even as I strapped the new sling around his torso and pulled hard on the handles.  He could not walk to the stairs, but sat is his walker shuffling his feet as I nudged him forward.  He could not, of course, ascend the stairs, and his arms and legs trembled and shook as I pulled up on the sling with all my strength on each step.  (The quote for the stair lift was $14,000, which means we will not be purchasing the stair lift.)  He could not get into bed until I lugged his legs up and in.  He could not cross the bathroom after his shower this morning, when I wrapped him in a towel, turned him, and pointed him in a controlled fall onto the walker seat.  Mom murmured “I can’t do this” several times, foreseeing what she would face when I was at work, and she is right: she cannot do it.  I listened all night for panting groans and shuffling feet, and darted to his room at 5:00 a.m. when he was part way back to bed, about to collapse, and I grabbed him and dropped him on the mattress and hoisted his heavy lame legs into bed.  So, is this really the end?  I do not think so.  But the end grows forebodingly closer, and I feel like I am staring down the long dark rifle barrel of inevitable imminence.  While Mom helped him dress, I cooked up my daughter Laura’s “Foolproof Pancakes” with a twist of mashed baby red bananas and half whole wheat—and with bacon on the side, because why not?  And Dad enjoyed his banana pancakes and bacon.  And Mom enjoyed her banana pancakes and bacon.   Me, too.

The Sling.

Courage at Twilight: Red Ink

When Harvey turned 80, I gave him an antique workman’s lunch box, with oil rubbed into the rust—he adores antiques, and has a knack for turning junk into treasure. In the lunch box I included a homemade card with flower petals and leaves, and on the cardstock insert I wrote in my best longhand a celebratory message to my dear friend, Harvey, the hero of Rabbit Lane: Memoir of a Country Road and a one-time tanner and rendezvous mountain man who wears quietly the name Many Feathers bestowed by Goshute and Navajo chiefs.  A therapist once told me that emotional writing should be done longhand, accessing distinct brain quadrants than when typing, so I write in careful cursive my personal messages and in my journal.  In solidarity with my son, Brian, I purchased from Noodlers Inc. a whorled resin fountain pen named Ahab for its whale-shaped clip, and filled its cartridge with a blend of ink called Black Australian Rose.  But the mix was off in my ink batch, more of a cherry red than a red-and-black.  But I had bought it, so I was going to use it, and began signing official city documents in bright red ink.  “Signed in blood,” I joked rather lamely, a tad embarrassed for the bright resemblance.  The ink even bled through the cheap copy paper.  I thought to darken the red with a few drops of Moon Dust, and now the ink really does look like fresh blood instead of cherry juice, though I am enjoying signing in blood.  My message to Harvey in his 85th birthday card was written in this ink-blood.  When I came home from work on his birthday, I found a box from him on my desk.  Before opening it, Mom wanted to show me the five new grab bars in the bathrooms, the most important of which was just inside the master shower door, there anchored securely now to help Dad step over the deep tiled lip of the shower.  He acknowledged that shower ingress and egress had been precarious with him grasping the soap dish for lack of a bar.  Now the simple act of showering will be far safer and more enjoyable.  And with a doctor’s order we paid no sales tax.  Mom was happy with the installer, Austin, who was so careful and thorough and kind, and upon inspection I, too, was satisfied.  Retrieving Harvey’s box—how characteristic of the diminutive man to send me a gift on his birthday—I found inside his antique lunch box, for he had moved out after losing his third wife, and had no room for antiques in the bedroom of his daughter’s house, and did not how long he would be around anyway, and knew I would appreciate it more than anyone else in the world.

(Pictured above: Harvey on his 80th birthday with the antique lunch box.)

The antique lunch box.

 

My Ahab fountain pen resting on a pen bed made by Brian.  See Brian’s YouTube channel “Down the Breather Hole” for fun fountain pen photos and videos.

 

Black Australian Roses “blood” ink handwriting sample.

 

The new grab bars are in!

Courage at Twilight: Self-Care

“So what does the caregiver do for self-care,” Kristine asked me, and I was stumped. All my possible answers sounded stupid.  Watch episodes of Disney’s Obi-Wan and Marvel’s What If.  Write posts for this platform.  Bake bread and cakes and cookies (and eating them).  Check Facebook and WordPress and Instagram and Gmail.  But her question is one that begged to be asked, and one I would do well to search carefully for answers.  I know I have several built-in barometers that warn me of high-pressure storm systems in the forecast, of high winds and flash floods and booming lightning and sinkholes.  The first is the profanity barometer.  Not that I am a profane or indecent person, and not that I cuss at people or the world or God.  Rather, I have discovered a direct correlation between by levels of emotional distress and my swearing under my breath at any little inconvenience, like dropping a paper clip at work or spilling on my favorite shirt.  The second is the compulsive eating barometer.  I doubt that one ever conquers hunger, but I have made real inroads: I lost 40 pounds through fasting, portion control, soda abstinence, and sweet avoidance.  I have discovered a direct correlation between levels of emotional distress and my compulsive eating, usually of chocolate covered almonds or Jordan almonds or lemon yogurt almost (what is it with almonds?)—but muffins and cookies and breads and other sweets will do in a pinch.  But sometimes fasting seems like a sugar-free marathon.  I feel disgusted with myself for such a lack of discipline and for having put back on ten of the old pounds.  Much of my distress comes from the perpetual pressures of caregiving, some from adding long work days to caregiving, some from adding a long commute to long work days.  And, no doubt, significant distress has come from having signed up for that dating app and corresponding with several women at once and the labor of making new friends and the terror of dating and that most exhausting of questions What next?  “So how does Roger care for Roger?” she asked.  Well, I am not sure, but I am writing this entry (does that count?), and I will arise at 6:00 a.m. to ride the stationary bike and read N.T. Wright’s Simply Jesus and leave for work without eating and listen to the birthing pains of the Civil Rights movement and respond to other people’s emergencies all day and drive home at rush hour and ask Mom and Dad about their day and cook another dinner and wash the dishes and search for hidden chocolate covered almonds and watch another episode of What If? and get to bed too late only to start it all over again tomorrow.  Whatever.  In any event, I feel too tired to worry about self-care tonight.

(Photo is of cherry chocolate chip bread baked yesterday.)

Courage at Twilight: Broken

The dishwasher door springs both broke and the heavy door slammed down if not snapped securely shut, and with the anchor broken off the washer tipped forward and the dish-laden trays rolled out with a jarring clang. Brian helped me pull the machine out and install the new springs and pulley cords.  Tracy helped fashion homemade counter-anchors from common elbow brackets—and they worked!  On advice from the Bosch store, I had bought an expensive new dishwasher base, but was relieved to find the old base had a built-in slot for the new springs, and I was spared the chore of disassembling the washer and the exasperation of not being able to see in my mind how to reassemble the parts back into the whole (an annoying life-long intellectual weakness).  As it was, You Tube was indispensable, even to replace the springs.  I felt thrilled and relieved we had succeeded in fixing the dishwasher, and thanked my Lord the repair was simpler than anticipated.  I had not realized the stress and pressure I was putting on myself to get the machine fixed.  But then Brian found a pool of water under the kitchen sink, dripping from a filter cartridge seal, dripping down a hole into the cavity above the finished basement, and we could not find the filter wrench.  The bowl I placed under the filter filled overnight and spilled again into the dark void in the floor.  Following with my eyes the various colored hoses (blue, yellow, red, black, and white), I discerned how to turn off the water to the filter and close the bladder tank valve—and the drip stopped, just in time to leave for church.  Staggering with his cane, Dad wondered if today would be his last day walking to our habitual pew near the front.  “My legs just won’t work.  I’m getting worse.”  Post-polio sets in like a heavy dense discouraging fog that never blows or burns off but grows only heavier and denser and more oppressive, and one’s feet become increasingly thick and leaden and mired in an energy-sapping sink.  He made it to and from church, today, with help under each arm.  Terry asked me how Dad was doing, not needing my response to see the truth, and knowing my unspoken thoughts as he offered, “I have a good wheelchair.  I’ll dust it off and bring it over.”  I thanked him, and suggested I would come get it so I could sneak it into the house unseen.  Dad thinks he likely will skip the walker and go straight from the cane to the wheelchair.  After church and rice casserole and a nap, Mom showed me how the DVD player would not respond to the remote or to direct button pushing—it had swallowed the DVD and refused to give it back.  She pried the tray open with a serrated Cutco knife, and the tray stuck stubbornly out, appearing much like a dead animal with its tongue lolling.  Remembering the no-longer-used basement entertainment equipment, I brought up the old combination VCR/DVD player, made before HDMI technology, and plugged the red, white, and yellow audio/video cords into the TV.  With new batteries in the remote, the old machine came to life, functioning correctly and obeying Mom’s commanding button bushes.  She was so pleased she decided the moment was right for an episode of NCIS, which she learned was also a favorite of Gabe’s other great-grandparents, the Scotts.  The word “surprised” describes my reaction to having fixed three broken appliance problems in two days—generally I am not very handy.  I only wish I could fix the only real problem of these four: Dad’s crumbling legs and feet and disintegrating mobility.  The best I may be able to do is to push his chair down the aisle at church to sit near our customary pew, on the front row, where space was left for a wheelchair.

Courage at Twilight: Falling on Friday

It is a Friday night, and I am home alone in my upstairs office, reading, and writing, and I am not out with friends and I am not being entertained by superheroes. Every hour upon the half, I roll out and fold over a butter and bread-dough laminate—24 layers—for tomorrow’s chocolate croissants, and between rolling I am reading the Selected Speeches and Writings of Abraham Lincoln.  I bought a copy for myself after reading another Lincoln biography, but Dad was so excited to dive into the book, and cannot read without a yellow highlighter (like I cannot read without a yellow highlighter) that I gave him my copy and bought a second for myself.  Already I have learned the words “vulpine” and “hagiography” and learned that Mr. Lincoln was not merely the stoic statue of still photographs, but faceted and furious and considerate and cutting and desperately sad and brutally patient, and witty, and he loved to tell stories, for stories will tell the truth faster and longer-lasting than the truth itself.  Dad told Lincoln stories at the dinner table, but he looked very tired; he had seemed tired all day.  When I first saw him this morning, and asked him “How are you today, Dad?” he responded with his characteristic “Marvelously well, thank you!”  But later he confessed to feeling “very poorly” and tired and weak.  When I finished my work day, he said he would go outside to blow the rock wall clean of pine needles and leaves and dirt.  And I began mixing my dough.  I kneaded and listened, tense, and soon heard a desperate bellowing from the back yard and rushed out the door to see Dad, on his hands and knees, sinking to splay on the concrete, shaking with vain exertions to move.  I managed to lift him back up onto his knees, and in a huge joint effort he inched up the arms of a patio chair high enough for me to kick another chair behind him, where he sat, trembling and pale.  “I fell,” he observed flatly.  Despite his state, he insisted on mounting the mower and cleaning up the grass.  Between bites of chicken and broccoli, he told us, “I think my legs just collapsed.”  Feeling traumatized, I blurted, “We need to have a conversation.  You cannot work in the yard if you are feeling weak and I’m not here.  If you fall when I’m not here, you’re not getting back up, and it will be an ambulance and a hospital and who knows what!”  Inside my head, I screamed, You’re not allowed to be stubborn!  To be stubborn is to die!  I had felt terror at finding him helpless on the patio concrete, at my not being strong enough to muscle his bulk off the ground, of his visible deterioration week to week, of knowing this is a one-way track with a finish line I don’t want to cross.  Seeing that my fury came from my fear, I could forgive myself and forgive him and calm myself into a nice family dinner.  It is a Friday night, and Dad is watching the Jazz game from his recliner, and I am reading and writing and rolling out my croissant dough, and after the rolls bake tomorrow, Dad and I will go outside together with rakes and shovels to do a little yardwork before dinner.

(Dad’s labors in the yard beneath his beloved mountains.)

Courage at Twilight: Getting the Socks Started

Every day at noon, Dad’s breakfast hour, he calls “Lucille!” for her to help him start his socks.  He can no longer reach his toes to start pulling on his socks.  When Mom was away one day, he called for with, “Hey, Rogie, will you help me get my socks started?  You mom’s not here.”  I scrunched the left sock up and covered his toes.  “I can get it from there,” letting me do only what he absolutely could not do for himself.  Next the right foot.  I have offered to help at other times—chagrined, he responds that he wants Mom do help him.  I understand.

(Image by bernswaelz from Pixabay.)

Courage at Twilight: Almonds by the Pound

I am not doing well.  Of course, that sentence is so vague as to mean nothing at all.  Let me see if I can rephrase.  I am feeling acute prolonged distress on account of continuous daily events like watching my father exert all his earthly energies merely to rise from a chair and stumble on the verge of forward falling with each step as he crosses a room and knowing that one fall with a blow to the head or a broken leg or hip would take him from his home and land him in a hospital or assisted living whence he might not return and knowing the finances and the absence of long-term care insurance and that the needs for the little that is left, the needs, the needs, come constantly and persistently and if Mom and Dad are long-term hurt or long-term sick and cannot stay home the bills would take their home from them for we likely would have to sell the home, the home, and then where would our family be? and I can’t even think or ask When will this end? because the only end is a sad and tragic end which I abhor and eschew and don’t ever want ever and so we endure together and we make the best of things which often is pretty excellent though always under pall.  I know I am not doing very well because I am writing in hysterical stream-of-consciousness and I swear frequently under my breath and I am consuming large quantities of lemon-yogurt-covered almonds and milk-chocolate-covered almonds and colorful crunchy Jordan almonds and feel a general awfulness inside and out and the frequent need to sit in a dark quiet room in my recliner under a soft fleece throw.

 

(Image by WikimediaImages from Pixabay.)

Courage at Twilight: Fig and Date Bread

Burt Brothers called to tell us what the repair would cost. We had worried the cost would be higher.  When I poured the windshield wiper fluid in the reservoir the afternoon before, the fluid gushed out onto the driveway.  I struggled to remove the heavy battery so I could see the reservoir and its tubing, and found both tubes (to front and rear wipers) broken in the same place.  I left small pieces of my finger behind reinstalling the battery.  The service project the next morning had caught my eye on Facebook, on the page I follow about the Jordan River, where I kayak and cycle.  But the event appeared to not catch many other eyes, for only two volunteers came, plus the Jordan River Commission Executive Director, who dispensed gloves, trash bags, and garbage pincers.  Our goal was to bag all the garbage at the river-side park before the wind blew it into the river.  I have kayaked around huge floating masses of flotsam on the river, some growing their own vegetation.  The Director thanked me for coming, dispensed some tips about good kayak launches for avoiding dams and portages, and handed me trail mix and fruit snacks.  Returning home, Mom and Dad and I drove two cars to drop off Dad’s faithful Suburban at the garage to repair the tubes, and we continued on in Mom’s trusty Legacy to the grocery store for the weekly shopping.  I felt happy as we arrived at Smith’s, but left the store an anxiety-ridden wreck.  I lost Dad in the store—he was not sitting at the deli where I usually find him when I have finished shopping.  I found him with Mom funneling into Luana’s check-out line—she is their favorite checker, and she always orders me to “take good care of them.”  “I’ll do my best,” I always promise.  Dad began trembling behind his cart—“I’m not going to make it, Rog,” he said.  “I need to sit down—now.”  Luana sent a bagger running for a chair he could not find, while another bagger drove up with a motorized cart onto which Dad collapsed.  “Nelson,” Luana chided (partly on my behalf, since she could get away with it), “the next time you come, you either will use this motorized cart, or you will not come at all!”  Dad nodded and smiled sheepishly, relieved just to be sitting.  He took to the cart naturally, motoring easily to the car.  Unloading the week’s groceries, Burt Brothers called to say Dad’s car was already fixed.  With Dad sitting in his recliner eating his onion and Swiss on multi-grain bread, Mom and I raced off to retrieve the faithful Suburban, good as new, and for a fair price, before the store closed at 5:00.  Mom crowed that she and I were the heroes of the day for retrieving the repaired Suburban.  We celebrated with pizza, salad, and Paul Hollywood’s beautiful fig and date bread.

Courage at Twilight: Mobility Strategy

I sat down with Mom and Dad recently, and asked Dad if we could discuss a plan to preserve his mobility for as long as possible. Far from defensive, he seemed grateful for the discussion: he and Mom know that him losing his mobility will dramatically affect quality of life for them both.  After our discussion, I typed and printed our Mobility Strategy, in big blaring pitch, and stuck it to the refrigerator with a magnet.  A day in the hospital, the Christmas and New Year holidays, and family celebrations interrupted some elements of the new routine, like going to the gym.  Other elements we started immediately.  I do not badger Dad about drinking water, for example, but every time I pass his chair, I hand him a bottle of cold water.  My message is clear.  And, to be fair, I hold my own water bottle even as I hand him his.  (Water intake can reduce edema.)  Here is our Mobility Strategy.  I will let you know how it goes.

  1. Stationary Bike. Ride the bike 6 days a week, for 30 minutes each ride.
  2. Gym. Go to the gym 2 days a week, weather permitting.
  3. Leg Compressors. Use the pumping leg compressors when reading at night.
  4. Walker. Use the blue walker between family room, kitchen, and dining room, as needed.
  5. Cane. Keep the “walking stick” handy for short treks in the house or to the car.
  6. Compression Socks. Order.  Wear.
  7. Elevate. When sitting, keep legs elevated.
  8. WATER. Keep several water bottles cold in the fridge.  Sip all day.

(Image by Willfried Wende from Pixabay)

Courage at Twilight: Pantene 2-in-1

Dad lamented that his scalp hurt, and asked Mom and me to find a better shampoo that would be soothing to his head.  Back in the day, when I had hair, I liked Pantene 2-in-1 shampoo and conditioner.  It softened and smoothed my hair and skin.  So, Mom and I brought home a bottle from the grocery store for Dad to try.  Within a few days, he beamed at how much he liked the new shampoo, remarking that his scalp no longer burned or stung.  (I suspect any shampoo-conditioner combo would have worked.)  The following week, at the grocery store, Mom told me to put five bottles in the shopping cart.  Only two sat on the shelf.  But now we know what works, and will add it routinely to the shopping list.

Courage at Twilight: Grocery Shopping, A Sequel

I feel so anxious in the grocery store with Mom and Dad.  In the produce section, I assess the fruits and vegetables with one eye even as I monitor Dad’s quickly waning strength with the other, tense and ready to catch him if he slumps.  While Dad waits exhausted and uncomfortable at a deli table, I rush from aisle to aisle scratching items off the shopping list.  I cannot suggest he stay home, and should not.  This is his life, and he enjoys grocery shopping.  If he wants to come with me, he should come.  It is healthy for him to get out of the house, to see the abundant beautiful produce, to get excited about beer-battered cod and grilled bratwurst and baking salmon on Sunday.  But he pays a steep price over and above the grocery bill.  “I’m done, Rog,” he whispered as we stood in the check-out lane.  “I hope I can make it to the car.”  Back at home, I carry eight plastic shopping bags in each hand, thanks to the handles Connor made on his 3D printer.  Mom and I put the groceries away, and stuff the plastic grocery sacks into a larger bag to be recycled.  Wiped out and grateful, they sink into their recliners with their books and newspapers—or the TV remote—and their snacks and drinks.  This is a perfect time for me again to urge Dad, captive to fatigue and comfort, to hydrate.

 

(Grocery bag carriers printed by my son-in-law, Connor.)

Courage at Twilight: Railings and Stairs

My siblings and I had begun to notice how ascending the stairs had grown more difficult for Mom and Dad.  They huffed and wheezed and groaned.  A wear pattern emerged on the wall where hands had sought some added traction and stability.  My sister Sarah arranged for a company to install a railing on the wall side of the stairs, at equal height with the wood banister.  Now it is much easier for them to push and pull their way up, using all four limbs, and to lean forward as they descend, easing the arthritis pains in their knees.  I will not lie: I use the railing, too.

Courage at Twilight: The Hated Walker

Dad loathes his walker. His walker is a royal blue, heavy-duty model, quite nice looking, I think.  I kept it for weeks in the back of the faithful Suburban, then moved it to a corner of the garage, and finally retired it to the basement.  Dad simply refuses to use it, and scowls at even a hint of a suggestion that he ought to use it.  Hatred is not too strong a word for his feelings for that walker.  On the other hand, Dad loves his garden tools, of which he has dozens of all shapes and varieties.  I have tried to cast his walker as simply another tool for him to use for specific tasks, when only that tool will do.  He was not persuaded.  And I have not pressed the point.  I think he feels embarrassed that even the simple act of walking is almost too hard for him, when he once ran marathons (yes, the 26.2-mile kind, 13 of them).  He did remark to me recently, “I know a wheelchair is in my not-too-distant future, Rog.”  I thought admitting that eventuality was remarkably brave of him.  I hope before then the dreaded walker will become his fast and long-term friend.

Courage at Twilight: Lasagna for Dinner

Dad told me he would cook dinner tonight.  We would have lasagna with meat sauce, plus steamed vegetables.  I told him that sounded wonderful.  When I arrived home from work, he took the lasagna out of the box and slid it frozen into the hot oven.  An hour later he emptied a bag of frozen lima beans into a pan, and shucked fresh sweet corn on the cob.  Stouffer’s makes such yummy lasagna—thank goodness for the occasional frozen dinner.  Stuffed and satisfied, I thanked Dad for making dinner.

Courage at Twilight: Mother’s Orders

Unlike Dad, Mom seems pleased with a little pampering. She does not feel threatened by being helped.  During her recent illness, she was not reluctant to tell me what she wanted and needed.  And I enjoyed doing it.  “Would you get the mail from the mailbox?”  “Will you dish up my dinner? Do you mind bringing it to me in my chair?”  “I’ll have mango juice, please.”  “Thank you, sweetie—I’m just bossing you around, aren’t I?”  I felt happy to be of good utility.  And she was sweet and grateful.  But now that she is recovering, she treks to the mailbox for the mail and dumps the recyclables into the green container, with no need of assistance from me.

Courage at Twilight: Don’t Hover

“I don’t want you to pamper me!” Dad barked.  I thought I was just being courteous, delivering his dinner, carting off his dirty dishes.  “I can do it myself.”  Watching him do it himself is painful for me because it is painful for him.  The effort to do the simplest things is enormous and exhausting.  But I respect his desire to not want paternalistic pampering.  I respect that he does not want to feel old and feeble, that he does want to feel strong and capable, despite knowing that “I’m going downhill fast, Rog.”  My opportunity is to affirm him discreetly, to help him with subtlety, to step quietly in without implying my help is needed.  So, when Dad is ready for seconds, I get up from the dinner table for an ice cube or the salt, and say with nonchalance, “I’m already up, so can I bring you something?”

Courage at Twilight: Stair Lift

I spent the morning researching stair lifts, also known as chair lifts, the makes and models, the Acorns and Brunos, leasing verses purchasing, wondering if it were time to make that move. I hear Dad grunting on every step, and Mom wheezing at reaching the top.  Sitting with them in their bedroom, I shared my research, and asked them what they thought about the idea, and the timing.  Dad acknowledged that climbing the stairs is hard for him to do, but he can do it.  He worries that once he stops doing a hard thing, he will lose the ability ever to do that hard thing again.  He thinks it best to keep on exerting, fighting even, doing everything he can to be strong and capable.  Mom and Dad had been going to the rec center six days a week before Covid shut down the nation’s gyms.  They would make a circuit through the many machines, strengthening back and arms and legs and heart.  He wants to go back, because his muscles have become soft.  He knows he will be starting over again.  I, too, seem to be always starting over after some injury or event (like moving) has knocked me out of my exercise routine.  I used to become discouraged about always starting over, but now try to be grateful I have the opportunity to start over, building on yesterday’s strength, and to keep working at life’s challenges, believing that every effort at living ultimately is strengthening and redeeming.  So, Mom and Dad said no to the stair lift, for now.  Dad wants to keep working as hard as he can.  He is not being stubborn about the stair lift, or walking, or working in his yard to the point of collapse (literally, like today, when he sank to the grass on shaking legs that just would not hold him up anymore, and crawled to the brick mailbox to claw his way back to his feet, while I stood inside obliviously baking a guava cream cheese tart, and how did no one driving by see him lying on the grass?).  No, not stubbornness.  Instead, he is fighting for his independence and his dignity and his strength, fighting for his life.  That example I can absolutely respect and emulate.

Courage at Twilight: Pillboxes

Mom keeps a list of Dad’s prescription medications in large-sharpie print on a white posterboard taped to a cupboard.  And underneath are the pillboxes, one for morning and one for night.  With his late-night reading, Dad often doesn’t take his a.m. medications until the p.m.  “Did you take your pills, Nelson?” Mom badgers from her recliner, knowing she has to badger because he forgets and procrastinates.  When he sheepishly shakes his head “no” she fires back, “You have to take your pills!”  Bad things can happen when the pills remain in the pillbox.  But eventually all the day’s pills get swallowed.  What a great little invention the pillbox is.  I even use one so the day’s medicines and vitamins and supplements are all ready to bottoms up.  A pillbox is especially handy when traveling, so I do not have to take a bag full of bottles, although I have learned the hard way to strap the box closed with rubber bands.  Come Sunday evening, Mom and I are filling Dad’s and my respective pillboxes.  You have to take your pills!

Courage at Twilight: The Gaping Jaws of Hell (or That Damned Window Well)

Dad rode off on his mower as I began my gut-tightening planks.  (Thank you, planks.)  At rep 5, I heard a muffled clang and noticed the lawn mower engine was not running.  Outside the window sat the mower without its rider.  I knew instantly what had happened.  Bounding out the back door, I found Dad on the ground, one leg and half his pelvis in the six-foot-deep window well, where the welded-rebar cover had collapsed from under him.  He could not move, despite body-shaking effort.  All he could clutch was bark chips, which had shredded his forearms.  This notorious window had previously swallowed my sister Sarah and her three-year-old son Gabe (see my story Angel Gabriel).   An extrication procedure quickly became apparent.  1) Grab sweat pants behind hamstring and pull, lifting leg and shifting pelvis out of window well.  2) Grab sweat pants behind hamstrings and haul straight legs into kneeling position. 3) Embrace back and chest, and hoist body to hands and knees.  4) Grip under armpits and pull to a standing position.  Thank God it worked.  The nearest seat was the lawn mower, which Dad shakily resumed, turning the ignition key.  “Do you promise me you are safe to ride?” I yelled above the roar, careful not to further bruise his already battered pride.  He nodded and sped off.  It occurred to me then: this story had a multitude of bad endings, and only one good ending.  Mom’s first fall taught me never to minimize a noise or an impression.  As a result of learning that lesson, I was at Dad’s side in seconds—but only because I was home early from work and was exercising in the only part of the house from which I could have heard the well cover collapse.  How grateful I felt for circumstances to have aligned in such a way to allow my presence and awareness.  I would never debase the occurrence with the words coincidence or luckMiracle will do nicely, thank you.

Courage at Twilight: Fim da Linha

What I’ve always known—cognitively—is beginning to sink deeply in—emotionally—with emphasis on the word “sink,” and pulling me down with it: I cannot fix this.  I do not have the power to heal the illness, to strengthen the tired muscles.  The canes and walkers and wheelchairs, the doctor visits and blood draws and MRIs, the heart monitors and blood pressure cuffs, the shakiness and fatigue, the “take your pills” and “drink more water” and the worry worry worry—they are all here to stay.  I am riding this streetcar with Mom and Dad to the fim da linha, the end of the line.  One day, the streetcar will come to a stop and Mom and Dad will get off, and I will wave good-bye.  And then the car will start again and turn some corner and carry me toward other stops.  Until then, my power is found in my weakness, my strength in my service.  All I can do is cook and clean and comfort, and listen, and love.  And this is enough.  In fact, this is the job.  The job is not to fix anything as we ride the streetcar together, but to be with them for the duration of the ride, and to make the ride as comfortable and peace-filled and happy as my siblings and I can.

Courage at Twilight: Hearing Aids

I have been shouting a lot lately.  Not because I am a brute or a bully or an offended narcissist, but because the hearing aid batteries seem to go dead every day.  Or the hearing aids are not being worn.  A person cannot wear hearing aids comfortably, of course, when mowing the lawn—such amplified sound would rattle their teeth and ruin what’s left of their hearing.  And there is the surgical mask, which, when removed, catches on the hearing aid and flings it across the church parking lot.  What an indignity to continually be shouted at, to have to ask “What?” and “Hmm?” all the time, to miss the happy songs of finches at sunset.

Courage at Twilight: Lawn Care

Dad keeps his lawn green and trimmed and mowed. The lawn gets nourished monthly with the correct kind of fertilizer, and enjoys a haircut twice a week.  Donning a straw hat against the sun and potential skin cancer, he drives his red riding mower, curving around the beds of bushes and flowers, happy to be in the saddle.  A neighbor commented, “Nelson, you are the most determined man I’ve ever seen in caring for a yard.”  One Friday night in spring, Dad asked me if I would fertilize the lawn first thing Saturday morning so that the coming snow would dissolve the fertilizer into the turf.  Come morning, however, the lawn was buried in four inches of heavy wet snow.  Not wanting Dad to be disappointed, I ventured to push the spreader anyway.  With two wheels on the “ground” the spreader merely pushed against the snow.  But with one wheel on the ground—the wheel geared to the spreader—and the other elevated, I made good progress.  It is often hard to see where one has fertilized because the spreader swath is three feet on either side, and I lose track of where I’ve been.  I did not have this problem now because the fertilizer sat on the surface of the snow.  Unfortunately, the grains of this particular fertilizer were yellow, and now Dad’s entire yard was covered with yellow snow.  Dad was astonished, having never seen fertilized snow.  He commented, “Roger—it looks like the whole lawn was trampled by peeing deer.”  Indeed, deer are frequent visitors, eating down spring’s lily shoots.  Just yesterday I watched a nearby mule deer doe watching Dad as he string trimmed.  Now, at summer’s end, the grass is green green.  Dad cut the grass again last night.  Now it’s my turn to do my job: take the push mower around the places where the riding mower can’t easily maneuver.  And empty the bags of cut grass.

Courage at Twilight: I Wasn’t There

I am wallowing in self-reproach.  Mom fell in the shower.  She does not remember falling.  She remembers only waking up on the floor, the water sprinkling down on her, the door flung open.  And I did not know.  And Dad did not know.  I asked her at breakfast about the scratch on the bridge of her nose, but she did not know where it came from.  As she sat in her Sunday dress, ready to go to church, Dad asked her how she felt.  “Not so good,” she said, seeming very tired.  I passed it off as a symptom of the sinus infection she is getting over.  She told me later about her slumping from her chair.  That morning I had awoken with a start when I thought I heard a bang.  I could hear water tinkling.  Remembering how the shower door clangs when it closes, I thought nothing more of it.  We went to church like normal, moving a little slower.  I cooked all afternoon to give Mom and Dad a nice Sunday dinner: tilapia poached in white wine with green onions, sauced with creamy mushroom-clam sauce.  For dessert I made crepes stuffed with vanilla-cream sauced apples.  It all tasted divine.  But all I could think about as I cooked and ate and washed dishes was not being there when Mom needed me.  I was there, in the same house, on the same floor, in the room next door, with Mom lying unconscious on the shower floor, being drizzled with warm water.  But I was not there for her.  I could have revived her, helped her up, given her care and attention.  But I was not there.  All this fancy French food and the effort it took and the palatable pleasure it brought meant nothing.  What would have meant something was following through on the waking start and investigating assertively and helping my mother when she needed me.  The bruise on her cheek bone is starting to show.

Courage at Twilight: The Little Chores

I have asked Mom and Dad to save up for me the little chores they would like me to do when I come home from work.  I’m no handyman, but I can do the little things: change a furnace filter, snap in a new smoke alarm battery, carry toilet paper to the basement bathroom, heft the water softener salt into the tank, unclog the corner rain gutter, snip out the old dog wire, tighten a door knob, pull the empty garbage cans back from the curb.  These little chores give me pleasure, not only because they are quick and easy, and not only because I am capable of doing them, but also because Mom and Dad appreciate me for doing these little chores: my doing them makes their lives just that much easier.

Courage at Twilight: French Cooking

One of my purposes is to make mealtime easy, healthy, and pleasant for Mom and Dad, by cooking dinner for them. For two years I have enjoyed cooking for them occasionally on a weekend.  Now it can be every day, if wanted.  It brings me pleasure to bring them pleasure.  I have always wanted to learn to speak French and cook French.  I study French lessons on Duo Lingo once or twice a week—I may become competent in ten years so.  And after watching Julie & Julia in 2020, I bought the 50th anniversary edition of Julia Childs’ Mastering the Art of French Cooking.  This week we enjoyed (1) quiche in a buttery shell with green onions, mushrooms, spinach, and ham, (2) salmon soufflé, (3) crêpes with Splenda-sweetened fresh fruit and almond whipping cream (for my son Caleb’s 22nd birthday “cake”), (4) carrots and parsnips glazed in a buttery sweet sauce, and (5) cream of mushroom soup, all from Julia’s book.  I have fun cooking delicious, appealing food, and we all enjoy consuming it.  The recipes were hard at first, but have become second nature with repetition.  Dad sent me an email today, “I will be cooking dinner tonight.”  These six words implied so much: (a) I can cook, too; (b) I want to cook, too; (c) I love to cook, too; (d) I can do things; (e) I want to share the load; (f) thank you for your cooking; (g) I want to take a turn; (h) I want to do something nice for you like you do for us; and, (i) isn’t it wonderful how people take raw ingredients and make such creative, delicious dishes?  So, tonight he cooked delicious “saucy pork burrito rice bowls” with ingredients and recipe provided by Hello Fresh.  When I asked if I could be his sous chef, he said sure.  As the three of us sat at the table with our fragrant rice bowls, Dad remarked, “We made this, together, didn’t we Rog!”  We did.    And it was very tasty.

Courage at Twilight: Food Storage

My church encourages its members to have on hand one year’s supply of food in case of emergency.  The Covid-19 pandemic affirmed that food storage isn’t a fool’s errand.  After being counseled my whole life, and after six months of Covid, I finally started acquiring food storage.  Not just staples, but things I would enjoy and that would be good for me.  Canned: refried beans; sweet potatoes; mackerel; sweet corn; green beans; mandarin oranges; spaghetti sauce; diced tomatoes; black beans.  Baking: flour; sugar; brown sugar; baking powder; corn meal; cassava flour; vegetable shortening; a gallon of vegetable oil; a gallon of corn syrup.  Spices: garlic; onion; cinnamon.  Bouillon cubes for chicken and beef broth.  Pasta: angel hair (my favorite).  Bottled water.  Powdered milk.  A stove in a can.  Two hundred tea candles and pint-jar lanterns.  I hope I don’t have to find out how long these stores, combined with their own, would last Mom, Dad, and me.  But I have them just in case, in boxes, on shelves in Mom’s basement cold storage room.

Courage at Twilight: Packing the Boxes

I packed 30 boxes in one night.  Packing boxes is such an odd life experience.  Into each box I put my books, my genealogical records, my decorations, my journals.  I seem to have more books and binders than any other type of possession.  I cannot bear to part with the good books I have read, so into the boxes they go, with the label “Books: Read.”  My latest favorites: The Plover by Brian Doyle, about a scarred sailor on a small sailboat who takes on several characters and through them heals his wounds; and, The Color of Law by Richard Rothstein, about the pervasive systematic racist policies of U.S. Government agencies that caused African Americans to suffer gross inequities in housing availability and affordability, safe neighborhoods, good jobs, adequate incomes, quality schools, clean environments, loan and mortgage equity, wealth generation, and military benefits.  Each book has walked me in the shoes of great men and women, has taken me to new realms of science, has filled me with joy and sadness and that sick feeling that comes from reading about human cruelty.  And when my bookshelves are empty and the boxes are full, I feel empty and bereft, as if my compartmentalized personality has been divided into boxes with labels, packed away to be loaded onto a truck and driven to my knew home and stacked in a corner of the basement until this new chapter, of which I have barely turned the first page, has ended (and I hope it is a long chapter).  Then, I will carry the boxes again, still unopened, to some other domicile, where they will be unpacked and their contents organized on shelves and tables until my children come to care for me.

Courage at Twilight: Building Boxes

I didn’t go to Wal-Mart for boxes.  I went there for snacks, including cheddar fish crackers, for a day trip to see Disney’s Beauty and the Beast with Hannah at Tuacahn.  But there was the cheerful Pepperidge Farms lady collapsing boxes by the dozen, happy to give them to me when I asked.  Packing is always a daunting task, and it starts with building boxes.  With Ken Burns’ 20-hour Jazz playing b-bop and avant-garde, I started folding and taping flaps, and tossing the boxes in a heap.  I feel so sad for genius Charlie Parker, playing sax music from heaven while drugs dragged him down to a living hell, with death at 34.  At DVD’s end, the living room was a heap of empty cracker boxes, about to be filled with books I may never read but yet carry around by the decade.  My life feels about to be reduced to a stack of heavy boxes marked “books.”  But mine is a good life: I will have a safe, loving place to live with, and care for, my generous parents.  Safe places—that is what we should be building.  I guess it starts with building boxes.  Forty down; so many to go.

Courage at Twilight: Second Guesses

With the plan in place, and the miracles having come about, the time to get to work had arrived.  Boxing.  Cleaning.  Moving.  Adjusting.  Saying good-byes.  And with that work came the second guessing.  What was I thinking to invite this change?  I am moving from my home, where I am comfortable and safe.  I will be lengthening my commute from 3 miles to 53, from ten minutes to an hour, each way.  I will be working day and night, six days a week.  I will be living in someone else’s space.  I will be giving up my solitary time for reading, writing, and film.  Did I do the right thing?  And yet, I know with a conviction, as powerful as any I ever received before, that this is the right thing to do.  This is missionary work, and I have been called to this mission.  I am holding on to that sure knowledge as I enter into a time of transition, a time of belonging neither in the old place nor in the new.  I am holding onto that conviction and moving forward with faith, however weak.